Wednesday, June 30, 2010

On the last trip to Seattle, my brother, my son, and I stayed with an old friend from high school, S., and her family. It was a nice, relaxing, trip, and I enjoyed visiting with S., again. S. and I reconnected via Facebook around the holidays this year. I worked for her dad for almost three years in high school.

Last year, when I first got on Facebook, one of my early "friends" on that site was another high school friend, C., who also worked at the same place as me (for S.'s dad). C. will be driving from southern California to north of Seattle, Camano Island (near Whidby Island), to bring her boat to her mom's and her mom's husband's house. C. will be there almost three weeks.

Last week, I realized that I would be in Seattle when she will be on Camano Island. So, I asked and she said it was okay if I came up to hang out with her and her family on the boat for a couple of nights.

Then, on Monday, while C. and I chatted on Facebook, I thought that maybe I could go up a day or two earlier and extend my stay. But then I don't want to leave Eddie for that long. So, I asked if he could join us. C. said she'd check with her mom and her husband.

And, yesterday, they said, "Yes!". B., the husband, said that he would even offer Eddie a ride on the Harley. And, B., and C.'s mom would take care of Eddie for a few hours while C. and I drove in to Seattle for my UW appointment.

This is especially good because I found out last week that I didn't need just one new crown, but a second one and a new filling. Originally, it was $1000 more than I had money for this summer . . . then my dentist took out the costs for the "crown build-up", which saved me $500. But I still have to pay an additional $500 extra out of pocket. There goes any work I had planned for converting my garage or renting a place at the Oregon Coast for a week. So, hanging out with a friend at her family's house in the San Juan's - an activity where my only out of pocket will be gas and my and Eddie's food - is all the more welcome! Thank you, C., B., and L.!

And, yes, a thank you to my dentist for writing off some of the costs of the crown.

Lin McJunkin, who was one of the artists joining us at the Dragonfly Eyes week-end in early May, sent me (for obvious reasons) a photo of one of her pieces, which is called "Healing White Light". I asked, and she said it was okay, if I posted it on the blog. I promised to give her appropriate credit. Here's the photographs:

Monday, June 28, 2010

I had another Herceptin treatment. We'll see how this affects my lymph nodes. The nurse felt the small nodules and wasn't sure what to tell me - I emailed the UW nurse and will see what she replies. I meant to call Dr. K today and see what he says .. . The nurse thought my guess that they were also swollen nodes was as good a guess as any.

In other news, my team won our game last night, 19-3, I think. I was 1 for 2 with a walk.

I haven't been on my feet as much the last few days, which means that the plantar faciitis isn't as bad as it was. I'm also massaging it every night and trying to stretch my achilles as much as possible.

Also, attended some meetings on our new Native American Cultural Center on campus. The plans are looking really really cool! Not sure when they will break ground for it - sometime next year.

The weather was really gorgeous all week-end - even as high as about 85 or 86 yesterday - and today in the low 70s. As long as it's sunny, I'm enjoying it!

Saturday, June 26, 2010

In softball news, we won our make-up game last night, 17-9. I was 2 for 4 batting (two pop-ups, gak!). I also tried to throw from right field and hurt my shoulder - I think I maybe tweaked some scar tissue in a way it didn't want to be tweaked.

Last Sunday, our softball team won 19-6, I think, and I was 3 for 4 batting with 3 RBI's. I even made the paper! : )

Yesterday, on my way to softball, I felt around behind the swollen lymph nodes - I have some swelling that's behind my shoulder (maybe the latissimus dorsi area?). And discovered about 5 or 6 smaller (maybe half a centimeter) nodules surrounding the larger swollen lymph nodes.

What the heck?

My guess is that these are all regular lymph nodes that are also inflamed because the fight between the Herminator-2 cells and the cancer cells is going on there. Call it a skirmish on the outskirts of a bigger battle . . .

I'll call one of the study doctors on Monday and see what she says . . . maybe even my own oncologist as well.

Thursday, June 24, 2010

My lymph nodes on the left side are still swollen and tender. But nothing more or less than they've been the last week. Dr. K called me on Sunday, while I was playing softball, to ask me how I was doing. I'm doing fine. As well as can be expected. I get tired, but that doesn't seem unusual. I'm still fairly active during the day.

I have been dealing with what I think is plantar fasciitis. I've chatted about it with both my physical therapist and my acupuncturist and they've given me some exercises and other tips to help. Not sure if it's caused by my Chacos or by wearing the Keens all winter and walking without enough arch support. My acupuncturist said that it is caused by the fascia not having enough fluids - and in general, a lot of my tissues are drier than usual because of the treatments. I do drink a lot of water every day - so it's not a matter of not getting enough fluids in my body - it's more that the fluids aren't getting to where they need to go.

In work news, I haven't been doing much actual work - but have been cleaning and reorganizing my office. I took out a couple of big desks and replaced them with narrower tables and another filing cabinet. B. is helping me - and she's great! I think I'm getting closer . . . once it's done, then I can turn my head to some actual work. Because then I can actually find whatever it is I need! LOL

In other news, I have been slowly getting back into dating again ... I have one coming up this week-end. At the very least, this guy and I share a love for the Oregon coast. I have no expectations . . . I figure this may take time. I figure I don't really need a man. It would just be nice. I'm happy being single. I love my life. Sharing it with someone would be a bonus. I will say that I'm very up front about my cancer status on my profile .. . something as big as having metastatic breast cancer is not something you spring on someone later.

Sunday, June 20, 2010

After I got my Herminator-2 cells on Thursday, I met my brother Scotty and Eddie back down at the Seattle Center. They spent about 4 hours down there at the Experience Music Project/Science Fiction Museum, and played at the arcade and rode rides. I did a little jam with Eddie.

By the time we got to our hotel room, I was really really tired. We had traveled from Corvallis that morning. So, we ordered room service and just hung out there for the evening.

The next morning, we drove south to Federal Way where we played at Wild Waves all day (from about 11am - after breakfast - to about 4pm). We got wet, rode the wooden roller coaster, and watched Eddie play in the Wave Pool. Luckily, the sun broke out about 1pm.

Then, we drove to my friend's house in Bremerton. S. and I went to high school together and attended the same church and I worked for her dad all through high school. Her boys are 9 and 6 and Eddie really enjoyed them when we stayed with them back in April.

Had pizza for dinner and relaxed. Got up the next morning . . . and relaxed. I think we watched at least two movies. Eddie played with the boys. In the afternoon, we visited the USS Turner Joy on the Bremerton waterfront. We had fun seeing the sailors' cramped quarters and climbing up and down ladders. Then, back to S's house, and then to their friends' house for a barbecue. Eddie enjoyed it. They had a trampoline and a wii and there were lots of kiddos around. I enjoyed visiting with their friends, but by about 9:30pm, I was tired. My feet hurt. My lymph nodes were tender.

Then, we drove home, with only a couple of stops here and there. Dropped Eddie off at his dad's house. I unpacked and then went to my softball game.

All in all, a great week-end. Thank you, S., for hosting us! It's much appreciated!

What's up for tomorrow? An acupuncture treatment. Then, coming up with a plan to organize my office. I'm getting rid of my huge desk and I got another filing cabinet.

I received my Herminator-2 cells on Thursday - all 16 billion of them! They weren't sure if that was the most that anyone received in this trial - or the second most. At any rate, it was a lot! : )

They said I might feel flu-like symptoms, namely chills and a fever. It didn't really hit me until later (I got my t-cells from about 2:30-3:00pm) - not really chills. I just felt chilly and then I felt my forehead about 9pm and decided it was warmer than usual. So, I took Tylenol. I took some again the next morning and then mid-day, but didn't really have a fever after that. I have only been taking Tylenol since then mostly for the pain in my lymph nodes.

My lymph nodes became a bit more swollen and that whole area is red - with even a bit of bluish-purplish areas. That's a good thing. It means the Herminator-2 cells are at work in those lymph nodes releasing cytokines and hopefully killing those cancer cells. I'll keep y'all posted about the status of these lymph nodes. My hope is that they start shrinking; they said that it might take a couple of weeks.

I asked Dr. S how they would know whether the t-cells (Herminator-2 cells) they harvested from me where the ones that my body started creating after I received the anti-Her-2 vaccinations. Dr. S replied that they don't know for sure. However, they do measure something (wavelengths? frequency? something?) in my blood before I get the vaccines and they measure it afterwards several times. I guess this wavelength?/frequency? changes when there's these t-cells. But I won't know about these for awhile.

So, fairly minor side effects. I have been having trouble with the bottom of my feet these past few weeks - my heels feel bruised and that tenderness extends up into the arches of my feet. I think that it might be plantar fascitis. I talked to my physical therapist about it and she said to do runner's stretches for the achilles. So, I've been doing that and massaging the tenderness. They did say I might have muscle aches. Is it due to my shoes? I wore Keens all winter. Starting wearing Chacos more regularly a few weeks ago. Could it be the Chacos? Hell if I know. I just know I'm tired of the achiness.

I played softball today, though. My left big toe wasn't as sore in my shoe as last week. And, I could throw without tweaking my shoulder. I batted 3 for 4 today and my team won 19-6!

Thursday, June 17, 2010

I'm off to Seattle again today, in order to get my t-cells. My brother, Scotty, and Eddie are going with me. I may drop them off at the Seattle Center before my appointment and they can either take a cab to meet me at the UW or I will pick them up before heading to our hotel, which is near Safeco Field this time.

No other big news to report. My swollen lymph nodes are still feeling a little painful and tender. The other day, when my physical therapist gripped that arm in order to stretch the muscles, she grabbed the underside of my upper left arm (around the triceps area) and, wow, that hurt! It was really tender and kinda burned! I'll be glad when that swelling goes down.

Other than that, I've been keeping busy with Eddie. First, this last week-end, I dug a mud-pit in preparation for Eddie's birthday party which is called "Eddie's Wipe Out: Kids Edition Birthday Party". We will have a variety of obstacles that kids will have to go through - this mud hazard, a water hazard, and a couple of others, with maybe jello or whipped cream! : )

That was Eddie in his mud pit. : )

Then, I went on a couple of field trips with Eddie during his last week of school. That included one to the local pool:

Yesterday was Eddie's last day of school. Yay! From now on, we get to sleep in! Well, at least until September.

Monday, June 14, 2010

I just had to vent a little bit: I got a bill from Samaritan Health Services today. It's the third time I've gotten a bill from them since April.

The reason why this is bad is because I have already met my $1,000 out-of-pocket maximum for the year. I met that in February. This means that I do not have to pay any more medical expenses out of pocket for 2010.

I get my statements from insurance explaining what they've paid. The rest is to be written off (or, in insurance-speak, "adjusted off") by the hospital.

For some reason, the billing folks at Samaritan keep missing these adjustments. So, I've gotten three bills, running anywhere from $80 to $200, when I shouldn't have received any at all from them.

I've had to make three telephone calls in the last three months - after I have to dig out my insurance "explanation of benefits" statement - to Samaritan billing and explain that I should not have gotten the bill, that they messed up, and that I don't plan to pay the statement. Each time, they apologize.

I asked the person (Chrissy) today if there was anyway they could flag my account to make sure that I don't get any more bills this year. She wasn't sure if she could.

Frustrating!

Can you imagine? What if I hadn't been keeping track of what I've paid out of pocket? I could have paid an extra $400-500 because of this. I can imagine some patients who don't understand our convoluted health care system would go ahead and pay this bill. This is exactly what a cancer patient does NOT need.

Laurie, over at Not Just About Cancer, has been using monthly lists in order to keep track of her goals for the year. I joined her, although I must say that while she's following her monthly, I seem to only be going bi-monthly. The last time I did it, it was in April! At any rate, here's my list for April along with a status report (blue represents completed, green is no progress, and red is partial completion):

1. Complete two more interviews with Yup'ik elders or community members, with report written by June 1. COMPLETED - have completed interviews; no report written yet. However, that wasn't really my fault - the person who hired me was supposed to get back to me about how to approach it and she only just wrote today. Report should be done by August 15.

2. Cancer blog analysis, with report written by June 30. No progress yet.

4. Conference proposal for International Conference on Indigenous Place Names (#5 above). No progress yet.

5. Apply for a one-week writing retreat on Mt. St. Helens - Due May 1. COMPLETED. But I found out that I was not selected as a writer. But that's okay. I would've had to camp out on the hard ground.

6. Continue practicing qigong 4-5 times/week; meditate at least 2 times/week. Integrate stretching and strengthening exercises for my arms and shoulders for lymphedema every day. This one has been up and down. I haven't meditated much at all and my qigong practice has decreased because of this travel to Seattle. I have been keeping up with the exercises for my arms and shoulders - what helps is that I see my physical therapist weekly and I feel some accountability.

7. Try to phase out more sugars and simple carbs from diet; increase the Omega-3s/anti-inflammatory foods. No progress, really. I can blame the travel and living with my family, but in the end, I need to take responsibility. I do try to eat veggies every day and I seem to be successful with that.

Hmm. I need to get better about referring to this list! Okay, here's my list for June.

June's List
1. Refer to June's List in order to keep on track and go from bimonthly to monthly.

2. Continue changing diet and get back into regular habit of qigong/meditation; continue arm/shoulder exercises.

3. Call program officer at NSF to see if I would still be able to submit proposal for student travel to Norway's conference. If so, work on proposal and submit it.

4. Analysis of Yup'ik interviews.

5. Cancer blogger analysis and write-up.

6. Create a mandala for Heather, who named my Herminator-2 cells.

7. Create mosaics for Theresa (my cousin), Jovonna (another King Islander), and Kim (a friend from high school. These mosaics are the result of a Facebook game? meme? in which you promised to create a piece of art for the first five people who responded to your post. I had four responses - but I can't remember the fourth! : ) I bought some shadow boxes for this purpose that are 12 inch x 12 inch. Smaller in scale than my first two. So, this shouldn't take too long.

8. Make travel plans for Alaska in late July/early August and Norway in September.

Sunday, June 13, 2010

I forgot to post about my last visit to UW. In the end, it was a bit of a bust. I hadn't read the protocol for awhile. And, the study staff did not remind me of one important fact: when I received my t-cells, I could not get Herceptin within six days of my t-cell infusions. So, last Monday, I got Herceptin. On Thursday, I informed the UW study group. They replied that I couldn't get my Herminator-2 cells that day.

Damn.

I kinda kicked myself - but on the other hand, I hadn't read the study protocol in a couple of months. I also hadn't referred to the calendar of visits they gave me. They also didn't say anything to me. I don't, in fact, remember anybody saying that I couldn't take Herceptin when I got my Herminator-2 cells. And, they didn't remind me that I couldn't last week or during leukapheresis.

So, a miscommunication on their part.

But they also said that I would've received the maximum dose of Herminator-2 cells for t-cell infusion #2. Apparently, the lab is doing a great job in replicating my Herminator-2 cells - either that or I produced a good number of them or some combination of the two.

So, they expect that I should get the maximum number of cells this week. Which is about the same amount - or more - than some other people. And, they could use the cells they made last week for study purposes.

So, all is not loss.

Except that I don't have Herminator-2 cells that my own body produced to kill the cancer. Crap.

But I will make sure I get all the Herminator-2 cells that I can get this week.

Live and learn, eh?

In the meantime, there are indications that the first infusion of Herminator-2 cells are doing what they need to be doing. The doctor, Dr. S., said that the swollen lymph nodes under my left armpit might get even more swollen.

They are. The swelling is red. I can feel the heat radiating from them. Dr. S saw this and said that this is the reaction they want: an inflammatory response, because the Herminator-2 cells were infused in my left arm and they traveled to the left lymph nodes, where they encountered cancer cells.

So, the inflammation (from what I gather) is caused from the Herminator-2 cells fighting the cancer cells that are in my lymph nodes.

Wednesday, June 9, 2010

I head back to Seattle tomorrow, for the next set of Herminator-2 cells. I think they are working, as I mentioned in my last post. The swelling has increased in my left armpit, which is an indication that the t-cells are in there, knocking out the cancer cells.

I'll blog about it when I'm up there.

I also received another $60 donation (bringing the total to $1410) and another $200 gas card. A good thing because I paid out about $600 cash last week, for three nights in Seattle. I figured I've used about $1150-1200 cash for the six visits so far (paid for four nights hotel, parking, food, gas); I've had four nights in a hotel arranged for me (about $750-800 worth); and I've used an additional $200 in gas.

Traveling back and forth to Seattle for this trial has been expensive: to date, if I'd have to pay for the hotels and other gas charges, I probably would've had about $2200 out-of-pocket travel expenses.

So, this is another note of appreciation to those individuals who gave me donations: the Chaplain's Office at Good Samaritan Hospital, an anonymous donor at the Regional Cancer Center, my friend "K", and my friend and colleage "Ms. K", and the American Cancer Society. Thank you!

And, while I have to pay $100 for a hotel tomorrow, plus food, I do have a hotel room set up by the ACS next week. Thank you!

Tuesday, June 8, 2010

So, I had a CT scan while in Seattle last week (on Tuesday). The largest tumor in my left lung had grown about 0.9cm (to 3.4 cm by 1.2 cm) over the past five months. There were also larger than normal lymph nodes under my left armpit (very visible to the naked eye), under the left clavicle, near the breast bone, and in my left groin. And, maybe a cancer nest under the skin under (but not in) the right armpit. I knew about all of them so I'm not too too worried about it.

Yesterday was my Herceptin treatment. I was tired from it again - although hard to tell if it was from the treatment or not getting a great night's sleep the night before. It was also a treatment where they got my blood to measure my CMP/CBC and tumor markers. I also asked Dr. K if he could get my Vitamin D level. My vitamin D level was 21.5 and "normal" is 30. I started taking 1,000 IU's of Vitamin D3 about a month ago; I just called Dr. K's office and asked him what he thought I should do and his reply was that I start taking 2,000 IU's each day.

Vitamin D3 plays a role in our body's immune system and several studies suggest that insufficient Vitamin D3 in our bodies lead to increased cancer risk. So, you bet I'm gonna increase my Vitamin D3 level!

My gut feeling is that this might constitute a spike in the CEA. Remember that last week, I had Cytoxan and the t-cell infusion. The CEA measures the amount of dead blood cells (if I remember correctly and some research that I shared awhile back said that a spike in the CEA might suggest that a treatment is working as the number of dead cancer cells has increased due to the treatment.

So, at the moment, I think that the combo treatments I've received are helping get the cancer back under control. Yay!

Sunday, June 6, 2010

I spent most of yesterday "putzing" in my room and getting it back in order after repainting it last week.

I'm happy with how it turned out. It feels like the room is larger (lighter, warm colors) and also lighter. Like a weight has been lifted from it.

I am mostly tired after my trip north last week-end. My stomach still felt a bit unsettled, even until yesterday, so I ate smaller meals. Also, this may be TMI for a lot of people, but in the interest of reporting side effects, I figure I needed to put this out there: I did suffer from constipation, which was a side effect of the antinausea drugs. I think my digestion system is finally getting back to normal.

Tomorrow is my next treatment for Herceptin and Zometa. I'll try to work in the afternoon.

Today, I'm going to take some stuff that we've been storing in Eddie's room and move it to the garage because now the garage has room after dad built the lean-to/shed storage on the side of the house. I'm doing my best to declutter my living spaces - and in a week or two, I start decluttering my work space!

I'm supposed to play softball this afternoon, but it's sprinkling here, so I bet the games are called off.

Friday, June 4, 2010

I'm back home from Seattle; my stomach is feeling a little unsettled from the Cytoxan on Wednesday. I didn't take the anti-nausea meds after yesterday morning and they said my stomach might be queasy for 48 hours. I wanted to get off the meds, though, as much as possible.

I received my Herminator-2 Cells, all 1.465 billion of them, yesterday afternoon. I am not having any side effects (which would be fever and chills and muscle aches) from that infusion. Yay! I may, however, end up with lymph nodes that are more swollen on that side, particularly since that's the side I get my infusion on. But it seems the same now. I'll let you all know if it changes.

Otherwise, I'm just tired. My brother snores - very loudly - and I couldn't get to sleep last night or the night before, so I'm low on sleep. That'll be rectified tonight as I'm in my own bed. Yay!

Tonight, I take Eddie to his school's carnival. I'm soooo glad the sun came out for it. It's the first real sun we've seen in days and days.

Wednesday, June 2, 2010

I'm sitting in my hotel room in Seattle - watching the news that Ken Griffey Jr is retiring (we were just at the Mariners game last night - they won 7-1).

I had my CT scan yesterday, but I wasn't able to get the results yet. We had P.F. Chang's for dinner (yummy) last night and then went to the game. Both Kevin (my brother) and I were really tired, but happy the Mariners did so well. We walked to the hotel room from Safeco Field - about 45 minutes.

I'm feeling a little bit woozy and tired but it could be worse. I think the anti-nausea meds are working. I have a bit of a headache, which is a side effect of one of the meds I'm taking (I think Zofran, the anti-nausea one). I am also taking a drug called Mesna, which is supposed to help protect my kidneys and bladder from the chemo drug I had today. I also have Compazine in case I feel really nauseous, but so far, so good. I do feel a little bit "urpy", meaning that I have a bit of a gassy stomach. But again, it could be worse, so I'm happy.

Hermination is tomorrow - my appointment is at 1pm. They say I may feel like I have the flu - feverish and with chills. But if it does what it's supposed to do, yay!

Okay, our neighbors just showed up and they are noisy as hell. I'm gonna call the front desk. Sheesh.